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Online Education and e-Consent for GeneScreen, a Preventive Genomic Screening Study

Authors
  • Cadigan, R. Jean
  • Butterfield, Rita
  • Rini, Christine
  • Waltz, Margaret
  • Kuczynski, Kristine J.
  • Muessig, Kristin
  • Goddard, Katrina A.B.
  • Henderson, Gail E.
Type
Published Article
Journal
Public Health Genomics
Publisher
S. Karger AG
Publication Date
Oct 26, 2017
Volume
20
Issue
4
Pages
235–246
Identifiers
DOI: 10.1159/000481359
PMID: 29069655
Source
Karger
Keywords
License
Green
External links

Abstract

Background: Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants' perceived ease when deciding to join and their understanding of key study features. Methods: Individuals were recruited via mailings that directed them to a website where they could learn more about GeneScreen, consent to participate, and complete a survey. Results: Participants found it easy to decide to join GeneScreen and had a good understanding of study features. Multiple regression analyses revealed that ease of deciding to join was related to confidence in one's genetic self-efficacy, limited concerns about genetic screening, trust in and lack of frustration using the website, and the ability to spend a limited time on the website. Understanding of study features was related to using the Internet more frequently and attaining more information about GeneScreen conditions. Conclusions: The ease of deciding to join a genomic screening study and comprehension of its key features should be treated as different phenomena in research and practice. There is a need for a more nuanced understanding of how individuals respond to web-based consent information.

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